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Hannah’s Story

FTD patient advocate and caregiver

First her grandfather, then her dad, now Hannah and someday even her daughters may follow the same devastating and rapidly progressive path toward frontotemporal dementia. This is the reality that Hannah, busy mother of two, neighborhood police officer and frontotemporal dementia caregiver, lives with on a daily basis.

There are currently no approved therapies for frontotemporal dementia (FTD), the second most common cause of dementia in people under the age of 65 (after Alzheimer’s disease). FTD causes progressive degeneration of the frontal and temporal lobes of the brain, which control decision-making, behavior, emotion and language. Although symptoms vary, FTD progresses more rapidly than Alzheimer’s, and death typically occurs three to ten years after the onset of symptoms.

Hannah recalls her grandfather’s rapid decline and sees her father following that same path. Just three years after being diagnosed in 2017, Hannah’s dad is now completely non-verbal and recently had to move to a skilled nursing facility where he can get the high level of daily care necessary at this stage of his disease.

“Most people have an idea of dementia, like memory loss later in life – but FTD is different. Looking back, my Dad exhibited signs of dementia as early as his mid-50’s but it wasn’t his memory that was impacted so much as his overall behavior including his ability to make important decisions.”

Knowing the genetic nature of FTD in her family, Hannah faced a gut-wrenching decision: should
she get tested and find out whether she might be destined for the same fate as her father and grandfather? Or should she try to live her life without knowing?

“I weighed the impact getting tested might have on my job, my friends and family, and the pro’s outweighed the con’s. Knowing my genetic status gave me the power to do something positive with this information, while the cons about finding out would always still be there.”

Dec 13, 2018 is a day she will always remember. Hannah found out that she indeed carries the gene mutation that will one day lead to FTD. It also means her daughters have a significant risk of developing FTD as well.

So what does Hannah do in the face of her genetic fate? Knowing that her future is uncertain, and she may miss milestones in her children’s lives, she makes the most of every day. Hannah makes a point of cherishing each moment with her daughters and providing them with as many happy memories and positive experiences as possible – they often go horseback riding and even took a family trip to Washington, D.C. for an FTD conference where Hannah presented.

“Life is for the living. I want to ensure my children will remember mom and all the amazing things we’ve done and achieved together.”

But that’s not enough for Hannah – she also wants to make a difference for others who may be facing similar challenges. As a patient advocate she shares her story with other families, keeps an active blog and raises funds to support FTD research.

Above all – Hannah has hope; hope that her children will not carry the genetic mutation, hope that there will be treatments in her or her daughters’ lifetimes to at least slow the progression of this devastating disease and break the genetic cycle of dementia.

It’s like Russian roulette. I knew before getting tested that I had a 50-50 chance of being positive for the genetic mutation that leads to frontotemporal dementia - it was so completely out of my control.”
FTD patient advocate and caregiver

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